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Genome truths

The decoding of the human genome is one of the most significant advances

in scientific history and is set to revolutionise medicine and the

prevention of illness but some fear it will also expose a genetic

underclass – those who are disadvantaged by the genes they have inherited.

The breakthrough means that around 97 per cent of the human genome has now

been mapped, with most of the code accurately sequenced, and this is

expected to be fully complete in three years. Scientists will use the data

to search for genes – the templates that cells use to make proteins. These

are the molecules that build and maintain the body and when they do not

work properly they cause disease.

The potential benefits of this breakthrough are huge and include:

Genetic screening. A sample of blood can be taken and used to predict

inherited diseases. For example, many cancers are influenced by genetic

factors, so the information would allow patients to be warned about the

likelihood of developing a medical condition.

New drugs. The new genetic information will allow the creation of drugs

tailor-made to prevent side effects common to certain groups of people. It

will also allow drug companies to make more effective drugs which target

the specific parts of our biology that cause disease.

Gene therapy. This involves replacing defective genes with heal-thy genes.

Germline engineering. This is the most extreme method and involves editing

the DNA passed from one generation to another. Any abnormal genes would be

found in the egg or sperm and corrected or replaced to prevent the

disease-carrying genes being inherited.

It has always been possible to predict possible predisposition to illness

using a family&#39s medical history. It is possible to study family history in

the same way as underwriters do for life, critical-illness, permanent

health and long-term care cover. While this is not purely genetic, it gives

a good indication of the effect of a family&#39s shared lifestyle and attitude

to health.

The benefits to humanity of the genome project are clear but they will not

come without controversy. One of the most significant questions is how will

the information supplied through genetic testing be used? In theory,

insurers will be able to use the information to predict the likelihood of

their customers developing certain illnesses. What impact will that have on

policies and premiums?


In 1998, the Government established the genetics and insurance committee

on the recommendation of the human genetics advisory committee. GAIC&#39s role

was to evaluate reliability of genetic tests and their relevance to

particular types of insurance.

To date, the GAIC has authorised the use of only one test, for

Huntington&#39s disease, when assessing applications for life insurance

policies. In the last year, the Human Genetics Commission, the successor of

the HGAC, has been reviewing the wider social and ethical implications of

the use of genetic information on insurance. Last month, the Commons select

committee on science and technology published a report on the same issue.

The HGC has also recently recommended a three-year moratorium on the use

of genetic tests for insurance purposes.

The ABI voluntary code of practice on genetic testing states that for

medical insurance, the results of genetic tests should not be taken into

account. Bupa does not require customers of its private medical insurance

business to take genetic tests as a condition of being insured. Nor do we

require customers to disclose the results of tests they may have had. Bupa

currently has no intention of changing its policy.

Over-the-counter testing

At the moment, genetic tests are only really available through the NHS and

the test results find their way onto medical records which could be used by

insurers. However, it is also possible to use over-the-counter or

internet-based testing methods, which do the same thing. However, the

results are known only to the individual and may never find their way onto

medical records, therefore they will not be known by insurers.

The existence of these tests could result in adverse selection. Adverse

selection occurs when the distribution of risk in a pool of insured people

is skewed unfairly. This happens where people apply for insurance schemes

knowing they have “bad genes” and, therefore, a predisposition to ill

health. This could result in an increase in increased premiums, the cost

for which would be carried by “honest” applicants who subsidise the

treatment of people with a predisposition to ill health.


Genetic test results can have a profound and life-altering effect on the

individual. The results could tell them that they have a high chance of

developing a killer disease such as cancer or heart disease. How would

someone react to that news? Whatever the test results, people need

professional counselling to understand its context and implications.

The cost implications of additional genetic counselling is a debate which

insurers need to have with geneticists. The potential costs, particularly

with the current pressures on PMI prices, should temper any rush to the

incorporation of voluntary tests in underwriting.

There will also be issues around medical advisers for health insurers

using this new and complex form of technology. How do insurers gear

themselves up to be able to use it?

It may involve significant training and education for medical and

underwriting staff or it may require restructuring across the industry so

that applications can be handled consistently and fairly.

The health insurance market will need to watch and evolve in relation to

the reliability of genetic tests. Some might argue that the breakthrough in

the genome project will help reduce premiums because it will produce new

treatments for conditions and therefore reduce claims. Others might say

that the very existence of these new and potentially expensive treatments

will push up premiums to cover the cost of customers making use of them.

Whatever the outcome, it will be a long time before important genetic

predictions of common causes of adult death will be available.


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